It is the last day of 2008. It has not been a good year for Dad. Too say that he is in a frequent fog would be to put the case mildly. His forgetfulness has fully affected his long, mid and short term memory to a state of total impairment. He cannot repeat a simple statement without confusion. A case in point would be today when he came home and said that there was some kind of schedule problem at the adult day care. Of course, those aren't the words that he used, but I had it figured out since tomorrow is New Year's Day and the center is closed. I was expecting some kind of comment, so it was easier to figure out what he was trying to say. I said, "Yes, it is closed for New Year's Day, do you understand?" He just looked at me. I repeated myself more loudly as he might not have heard. The ear doctor said that he had no way of determining if Dad could hear or not since he could not give any appropriate responses. Anyway, with a louder statement and more slowly spoken, he just looked at me and said, "No." I said, "Repeat after me, New (pause) Year's (pause) Day." He just looked at me. We tried again. And again. And again. No, he could not get past the word "new". He just couldn't do it.
Yes, that brings us to Christmas. He didn't get that either. It was such a dramatic change from last year that it was astounding. As we built up to Christmas he said nothing. He made no comment about decorations. When we discussed Christmas he showed no comprehension of what it was. Last year he wanted to buy presents. This year he was without any understanding of the day. On Christmas Eve the center closed early. They had explained it to them, but he didn't get it. When he came home we explained it to him, but he didn't get it. We told him the center would be closed the next day, but he didn't get it. We went to Christmas Eve service at church. He didn't know why we were going or what it was about. After church we reminded him that there would be no bus in the morning. He wanted to know why. We explained that it was Christmas but he didn't understand. On Christmas day we opened our presents. He just sat there with his and kept looking at them over and over. (Yes, he opened them.) He was in a fog. He was home for Christmas, but only in his dream world, not in reality.
His routine is all that there is left. That has been messed with a lot lately. There was a snow day that closed down the center. Routine upset. He had a hard time with that. The next day my brother couldn't stay long as we were having another blizzard that afternoon. Routine upset. The next day church services were canceled because of the blizzard. Routine upset. The following week there was early closure of the center on Christmas Eve and no center on Christmas day. Routine upset. This week it is closed tomorrow. Routine upset. It is no longer an issue of not liking to go to the center. The center is his life, his routine. That is a quantum change from the beginning of this year when he still routinely complained about going because he didn't like it. All the big events that he could grasp at least a little are now ungraspable. His decline has accelerated from the "Bunny Slope" to the "Expert Slope" level. Since it was bad for him before, and he was confused before, it is worse for him now. Sometimes he looks like he knows that he is in a fog, that he can't grasp things said or thoughts thought. Then he looks weakly and sadly with a shrug and then it is all gone again. NO, it has not been a good year for Dad. He has dived faster and farther than the stock market. Next year he won't be home, not home here anyway, for Christmas. This is his last year here, but maybe he wasn't here already.
What next? Our top three choices for nursing homes told us two weeks ago that they had no planned openings until late March or April. That was an incredibly shocking bit of news and diminished our sunshine in this descent. We are committed to placing him in the best possible facility and not taking just any place to get him placed. We have no choice number four when it comes to homes. Unless there is an unexpected opening, we will have Dad for another 3 to 4 months. That is 3 to 4 months of his not really being here, but requiring much more care as a consequence. For Dad there is now only descent. For us, the weather seems to have turned a bit cloudy. We thank God that He is always behind the clouds casting his Sonshine. In the coming months, that will be our sunshine in this accelerating descent.
Wednesday, December 31, 2008
Friday, December 05, 2008
Little things and big things
Years ago a good friend of mine was a second grade teacher. She told me that she hated weekly reader days. Since I always liked weekly reader, I wondered why she didn't. How many times can you hear and laugh at the same lame joke? she asked. Every student would read the joke page and then go to her desk and ask her the same riddle or tell the same joke. At first it was cute, but at the end of the day it had gone to the proverbial straw and the camel's back. Such a little thing became big, like Chinese water torture or the great science fair demonstration of how erosion works by placing a bar of soap below a slowly leaking faucet. Just a little thing, but the effects are enormous over time. Are they little things or big things?
Is it little or big? 1) Having to strap him into his seat in the car each time we go somewhere because he can't figure out the seat belt. 2) Hearing the same story at every meal about his grandparents and their 14 children and how they ate in shifts. (That is approximately 1000 supper meals where we have heard the same story.) 3) Seeing his unclean hair, dry shower stall and no wet towels why he swears he just took a shower and swears at you for doubting him. 4) Having him mumble incoherent syllables and then in a moment of clarity ask, "well, what do you think?" 5) Never washing his hands after he goes to the bathroom, which is usually just before dinner, and then holding his hand during prayer for the meal. 6) Rapping on the wall just before entering any room. 7) Standing in the most used passageway in the house indifferent to all the traffic trying to get by. 8) Arguing about the waste of soap and water when he is made to wash his hands before drying the dishes. (A note here, he insists on helping by drying the dishes after supper each night. He also insists on making a major production out of not needing to wash those still filthy hands.) 9) Those sudden unannounced appearances (the few times he doesn't announce his arrival with a rap on the wall) which almost always happen long after you think he is sound asleep in bed. (He can be quieter than a cat.) These appearances are almost always accompanied by the one word expression, "well?" 10) Getting his coat and hat on twenty to thirty minutes early each morning to wait for the bus in the hottest room in our house (the kitchen) and then sitting there for those twenty to thirty minutes saying, "I guess they forgot about me today." These 10 items are not prioritized, just listed. N0 big deal in and of themselves. Repeat daily ad infinitim nauseum. Throw in the big things and mix well until you would tell the national secrets to anyone who asked.
Are these little or big? 1) Grabbing toys away from 3 year old great grandchildren because you don't know what the toy is or why they have it. 2) Throwing one of those 3 year olds on the floor and twisting his arm to get one such toy. 3) Swearing at anyone who challenges such actions, or other actions he cannot otherwise explain. 4) Playing hide and seek with his dirty underwear which was dirtied by an accident which he swears (literally) he never has. (Somebody else in his room sure has a lot of them then.) 5) Lashing the dog to the lever on his recliner because he didn't want her to leave his room. 6) Trying to pick up but instead dropping his 1 year old great granddaughter and then swearing (literally) that he didn't and why is everyone upset. 7) Provoking the dog with constant teasing gestures until she nips at him. (So far so good. She is a good dog and does no harm, but she has gotten quite agitated at times.) Again, these are not prioritized, just listed. These happen with some frequency, but not daily like the others. Now blend them into the pot with general incoherence, confusion on what he is trying to say and you are trying desperately to figure out, the frustration that brings to both parties, and then mix in the final ingredients of paranoia and persectution complex which is often a by product of Alzheimer's disease and the stew is ready.
Oh, there is one final ingredient. This week the nursing home said they have no beds available for men and don't have any planned vacancies in the near future. A four month pre-registration time turns out to have been highly inadequate. We are so thankful for the services provided by community agencies like adult day care, home health aids, visiting nurses, quarterly social worker visits and of course caring friends like the one who comes weekly to play cribbage with Dad. My bride and I have had an opportunity on many of those cribbage days to take a walk and relax for a half hour. Wonderful. These people are the icing on the cake that hides all the lumps of the cake batter. The candles on the cake are our daughters who take time from their busy schedules and watch him when we absolutely have to get something done and he is not at adult day care. There is my brother who comes once a week and takes Dad out to supper. One meal without the story of 14 grandchildren is more of a treat than many would realize. It does take a village to care for an Alzheimer's patient. The village is the sunshine in the descent.
Is it little or big? 1) Having to strap him into his seat in the car each time we go somewhere because he can't figure out the seat belt. 2) Hearing the same story at every meal about his grandparents and their 14 children and how they ate in shifts. (That is approximately 1000 supper meals where we have heard the same story.) 3) Seeing his unclean hair, dry shower stall and no wet towels why he swears he just took a shower and swears at you for doubting him. 4) Having him mumble incoherent syllables and then in a moment of clarity ask, "well, what do you think?" 5) Never washing his hands after he goes to the bathroom, which is usually just before dinner, and then holding his hand during prayer for the meal. 6) Rapping on the wall just before entering any room. 7) Standing in the most used passageway in the house indifferent to all the traffic trying to get by. 8) Arguing about the waste of soap and water when he is made to wash his hands before drying the dishes. (A note here, he insists on helping by drying the dishes after supper each night. He also insists on making a major production out of not needing to wash those still filthy hands.) 9) Those sudden unannounced appearances (the few times he doesn't announce his arrival with a rap on the wall) which almost always happen long after you think he is sound asleep in bed. (He can be quieter than a cat.) These appearances are almost always accompanied by the one word expression, "well?" 10) Getting his coat and hat on twenty to thirty minutes early each morning to wait for the bus in the hottest room in our house (the kitchen) and then sitting there for those twenty to thirty minutes saying, "I guess they forgot about me today." These 10 items are not prioritized, just listed. N0 big deal in and of themselves. Repeat daily ad infinitim nauseum. Throw in the big things and mix well until you would tell the national secrets to anyone who asked.
Are these little or big? 1) Grabbing toys away from 3 year old great grandchildren because you don't know what the toy is or why they have it. 2) Throwing one of those 3 year olds on the floor and twisting his arm to get one such toy. 3) Swearing at anyone who challenges such actions, or other actions he cannot otherwise explain. 4) Playing hide and seek with his dirty underwear which was dirtied by an accident which he swears (literally) he never has. (Somebody else in his room sure has a lot of them then.) 5) Lashing the dog to the lever on his recliner because he didn't want her to leave his room. 6) Trying to pick up but instead dropping his 1 year old great granddaughter and then swearing (literally) that he didn't and why is everyone upset. 7) Provoking the dog with constant teasing gestures until she nips at him. (So far so good. She is a good dog and does no harm, but she has gotten quite agitated at times.) Again, these are not prioritized, just listed. These happen with some frequency, but not daily like the others. Now blend them into the pot with general incoherence, confusion on what he is trying to say and you are trying desperately to figure out, the frustration that brings to both parties, and then mix in the final ingredients of paranoia and persectution complex which is often a by product of Alzheimer's disease and the stew is ready.
Oh, there is one final ingredient. This week the nursing home said they have no beds available for men and don't have any planned vacancies in the near future. A four month pre-registration time turns out to have been highly inadequate. We are so thankful for the services provided by community agencies like adult day care, home health aids, visiting nurses, quarterly social worker visits and of course caring friends like the one who comes weekly to play cribbage with Dad. My bride and I have had an opportunity on many of those cribbage days to take a walk and relax for a half hour. Wonderful. These people are the icing on the cake that hides all the lumps of the cake batter. The candles on the cake are our daughters who take time from their busy schedules and watch him when we absolutely have to get something done and he is not at adult day care. There is my brother who comes once a week and takes Dad out to supper. One meal without the story of 14 grandchildren is more of a treat than many would realize. It does take a village to care for an Alzheimer's patient. The village is the sunshine in the descent.
Saturday, November 08, 2008
Real Joe and the Conversation to Nowhere
What a marvelous week! No, Dad has not been accepted into the home yet. No, we didn't strike gold in the back yard. Something much more prosaic. When Dad moved into our home three years ago he was an unhappy camper. He couldn't drive anymore or handle his own money. There seemed very little, in fact, that he had control over in his life. His response (other than terrible 0utbursts of anger and a generally venomous attitude) was to grow a beard. He could control his face, and he did. It has been an ugly beard for 3 years. The grand kids had a look alike contest and he was voted most to look like Fidel Castro. A year and a half ago my beloved bride found a new barber to take him to and that made some improvement. That barber, against Dad's wishes, trimmed the beard at each haircut. "I'm never going back to him," he would fume each time, but since my bride was driving, he did go back and get a nice trim each time. It was a small improvement in an ugly beard, but it was an improvement. This week as he was getting his shower by the home health aide, she shaved him. WOW!!! The real Joe reappeared. My beloved bride had purchased him a whole new set of clothes, multiple shirts, sweaters, pants, etc. She tossed the old stuff he has been clinging to for the past three years. Now he looks spiffy. Marvelous! Oh, and while he is still demented, he doesn't look so demented anymore. He looks like a clean, neat and healthy 80 something man. Marvelous.
Outward appearances aside, he still has dementia and what is inside has not changed. Tonight my brother was over and they played cards together for 2 hours then my brother took Dad out to eat. That is the weekly routine. When they got home my brother had some pictures to show us of his grand kids. (Almost as cute as mine.) We stood around talking for about 40 minutes and the conversation took many twists and changed absolute directions multiple times. Dad was standing there listening, to use the term very loosely, and smiling at things that were said. That would be the normal interpretation of what was happening, but it wasn't really happening. What Dad was smiling about is anybody's guess.
After a few minutes he broke into the conversation with a question about our last name. No, we were not talking about anything like that at all. Since his original question had made no sense, I said, "What?" He asked again and I picked up what he was asking and answered him. The conversation with my brother and bride and myself went on. Five minutes later Dad again broke into the conversation with another question about our last name. Again, the question was unclear and after a "what" he asked again and again I answered him as the other conversation went on. Skip ahead five more minutes and it happened again. This time he was recalling a trip he had made to Europe and how he had found our last name in the phone book. Another unclear question and clarification and answer followed. All this time he is seemingly following our conversation, but he hasn't heard or understood a word. Not one. This went on until my brother left. It was the conversation to nowhere from nowhere in the midst of a completely different and ongoing conversation that lasted 4o minutes. He is now all bright on the outside, but the inside is still dimming rapidly. The outside this week is sunshine, marvelous sunshine. The inside is descent; the bulb dimming more every day. But he looks good. Marvelous!
Outward appearances aside, he still has dementia and what is inside has not changed. Tonight my brother was over and they played cards together for 2 hours then my brother took Dad out to eat. That is the weekly routine. When they got home my brother had some pictures to show us of his grand kids. (Almost as cute as mine.) We stood around talking for about 40 minutes and the conversation took many twists and changed absolute directions multiple times. Dad was standing there listening, to use the term very loosely, and smiling at things that were said. That would be the normal interpretation of what was happening, but it wasn't really happening. What Dad was smiling about is anybody's guess.
After a few minutes he broke into the conversation with a question about our last name. No, we were not talking about anything like that at all. Since his original question had made no sense, I said, "What?" He asked again and I picked up what he was asking and answered him. The conversation with my brother and bride and myself went on. Five minutes later Dad again broke into the conversation with another question about our last name. Again, the question was unclear and after a "what" he asked again and again I answered him as the other conversation went on. Skip ahead five more minutes and it happened again. This time he was recalling a trip he had made to Europe and how he had found our last name in the phone book. Another unclear question and clarification and answer followed. All this time he is seemingly following our conversation, but he hasn't heard or understood a word. Not one. This went on until my brother left. It was the conversation to nowhere from nowhere in the midst of a completely different and ongoing conversation that lasted 4o minutes. He is now all bright on the outside, but the inside is still dimming rapidly. The outside this week is sunshine, marvelous sunshine. The inside is descent; the bulb dimming more every day. But he looks good. Marvelous!
Monday, October 27, 2008
Anniversary
Here it is. Three years ago this week, Halloween day, it all began. Who would have thought what that day would bring. I took my brother to see Dad to go to a scheduled doctor's appointment, one that I had let Dad know about in advance. When we got there he had no idea why we were there or why he was going to the doctor. After a pleasant lunch together at his favorite restaurant, we went to the appointment. Who would have guessed the outcome.
I knew that Dad has Alzheimer's disease. My bride and I had done a lot of study on it over the past 2 years since Dad had called up and told me he had unexpectedly sold his house. Reading about it is one thing. Experiencing it is another. A person can read about war, but unless they have been there, it is only a partial reality. The sights, the sounds, the smells of each encounter, the racing of the heart, the fear, the relief are only half real from literature or the movies. I have come to realize that watching Hogan's Heroes is about as good at preparing someone for prison camp as reading an Alzheimer's book is at preparing someone to take care of an Alzheimer's patient. There is nothing quite like reality.
That was three years ago. Dad is still with us. The original expectation was the he would live in his own rented apartment near us and we would look in on him two or three times a week as needed. We had quickly found an appropriate apartment complex and had the rental forms ready within a week of his arrival. By that time, though, we were getting the first glimmers that reality was not going to match expectation. It was going to be three weeks before he could get into his new apartment and by then it was crystal clear he could never again live on his own. Agenda change. Two months later I sat down with my siblings and asked their ideas. Their ideas were quite clear. Possession is 90% of the law and I already had him, I could keep him. The anticipation was that he would be in a home in less than six months and if there was any money left in his account after I had paid all his overdue bills, I could take my bride out for dinner. Reality check. Agenda change.
Three months ago my bride and I came to the realization that after 2 years and 9 months with us, with rapidly declining overall health and sharp decline in mental acuity, it was time to place Dad in a home. We planned to have all arrangements made and have him placed within three months. Reality check. Agenda change. Dad is still here. Actually he has been a bit more lucid this past week than in the past month. These episodes happen. Alzheimer's is not a straight line from clear to incoherent. A stage that could last for 6 months can also, we have learned, last for 16 months. Within that stage there can be ups and downs that reflect the previous one or more stages and periods that reflect the coming stage or stages. It is not a straight line. Reality check. When I talked with my siblings three years ago, we didn't know that. While they had not read up on the disease, they took my word for it and my word came from the literature which hadn't exactly explained all of it. Reality check.
So here we are. 3 years later and light years wiser. We have no idea what to expect tomorrow so we go with the flow today. That is the reality. Dad is here and we work to make sure that each of his todays, which he can't remember tomorrow, are as satisfactory as we can make them. Happy anniversary. I don't think we will throw a party.
I knew that Dad has Alzheimer's disease. My bride and I had done a lot of study on it over the past 2 years since Dad had called up and told me he had unexpectedly sold his house. Reading about it is one thing. Experiencing it is another. A person can read about war, but unless they have been there, it is only a partial reality. The sights, the sounds, the smells of each encounter, the racing of the heart, the fear, the relief are only half real from literature or the movies. I have come to realize that watching Hogan's Heroes is about as good at preparing someone for prison camp as reading an Alzheimer's book is at preparing someone to take care of an Alzheimer's patient. There is nothing quite like reality.
That was three years ago. Dad is still with us. The original expectation was the he would live in his own rented apartment near us and we would look in on him two or three times a week as needed. We had quickly found an appropriate apartment complex and had the rental forms ready within a week of his arrival. By that time, though, we were getting the first glimmers that reality was not going to match expectation. It was going to be three weeks before he could get into his new apartment and by then it was crystal clear he could never again live on his own. Agenda change. Two months later I sat down with my siblings and asked their ideas. Their ideas were quite clear. Possession is 90% of the law and I already had him, I could keep him. The anticipation was that he would be in a home in less than six months and if there was any money left in his account after I had paid all his overdue bills, I could take my bride out for dinner. Reality check. Agenda change.
Three months ago my bride and I came to the realization that after 2 years and 9 months with us, with rapidly declining overall health and sharp decline in mental acuity, it was time to place Dad in a home. We planned to have all arrangements made and have him placed within three months. Reality check. Agenda change. Dad is still here. Actually he has been a bit more lucid this past week than in the past month. These episodes happen. Alzheimer's is not a straight line from clear to incoherent. A stage that could last for 6 months can also, we have learned, last for 16 months. Within that stage there can be ups and downs that reflect the previous one or more stages and periods that reflect the coming stage or stages. It is not a straight line. Reality check. When I talked with my siblings three years ago, we didn't know that. While they had not read up on the disease, they took my word for it and my word came from the literature which hadn't exactly explained all of it. Reality check.
So here we are. 3 years later and light years wiser. We have no idea what to expect tomorrow so we go with the flow today. That is the reality. Dad is here and we work to make sure that each of his todays, which he can't remember tomorrow, are as satisfactory as we can make them. Happy anniversary. I don't think we will throw a party.
Thursday, October 09, 2008
Oh NO! Not again!
Wow! It has been almost a month since my last post. Who knew? Not me. I think of things to say almost daily. Interesting things happen about that often. But, I guess I don't write them here because it has been a month.
Well, Dad had a new battery put in his pacemaker. My bride was with him all day at the hospital from 6am to 5pm. Having Dad wouldn't be possible without her. Someone has to go out into the wicked old world and earn our keep. Actually, I think it is the easier job to watching Dad. What made the event so interesting was that there was really SOMETHING in the meds they gave him to do the surgery. When he came out of surgery he was more alert than at any time in the past 3 months. That may have something to do with the fact that his blood pressure shot back up to 179 over 110. While that sounds absolutely terrible to me, the doctor seemed unconcerned. Then again it may not have had anything to do with his blood pressure and only with the meds. Anyway he was alert, very, very alert. He was volatile and angry and argumentative just like 2 years ago. It was unpleasant to take that trip down memory lane.
The first thought I had was, "Oh, no!! If he stays like this he will fight us tooth and nail when it comes time to go into a home." No, I didn't think about keeping him longer. His relapse was harder on us than his recent decline. We have put up with such abuse from him in the past when we still had some stamina left. That kind of abuse now when our stamina is all gone was a little over the top. NO, A lot over the top. No, he wasn't better or getting better. He has Alzheimer's disease and won't get better. But if the spike in alertness lasted we would be facing some really challenging days and bigger decisions about his care. Would we keep him longer to postpone the fight over a nursing home? We would both have mental breakdowns before the weekend was over? Would we place him in a home sooner, any home, to stave off that breakdown? Yes, the line is now very taut. I wanted to give him to my brother for his birthday, I really, really did, but he said he wouldn't take him anyway, so that was out. What to do about Dad?
Good news, the meds or whatever wore off in two days. He no longer remembers being in the hospital. He is back to near incoherence. He is back to placidity. The rope is a little less taut and we can breathe. I assure everyone who is on the sidelines wondering about my attitude that unless they have lived in the same house for 3 years with an Alzheimer's patient who has run the gamut from violently abusive to babblingly repetitious, they had better not make a comment or judgment at all. To anyone who thinks we should just dig deeper for more strenght, please take him for a month while my bride and I try to find where deeper is?
What about the nursing home wait? We are still waiting. Right now it doesn't seem he will make it there by the first of November. That was supposed to be a birthday gift to my bride. Anyway, with that realization in mind we are ready to stay the course as long at it requires. There must be strength there somewhere. My bride and I have talked about it and that is just the way things are and that is just how life is. Thank God there is a God, and He will be with us through this today, tomorrow and as long as it takes. That is our sunhine in Dad's descent.
Well, Dad had a new battery put in his pacemaker. My bride was with him all day at the hospital from 6am to 5pm. Having Dad wouldn't be possible without her. Someone has to go out into the wicked old world and earn our keep. Actually, I think it is the easier job to watching Dad. What made the event so interesting was that there was really SOMETHING in the meds they gave him to do the surgery. When he came out of surgery he was more alert than at any time in the past 3 months. That may have something to do with the fact that his blood pressure shot back up to 179 over 110. While that sounds absolutely terrible to me, the doctor seemed unconcerned. Then again it may not have had anything to do with his blood pressure and only with the meds. Anyway he was alert, very, very alert. He was volatile and angry and argumentative just like 2 years ago. It was unpleasant to take that trip down memory lane.
The first thought I had was, "Oh, no!! If he stays like this he will fight us tooth and nail when it comes time to go into a home." No, I didn't think about keeping him longer. His relapse was harder on us than his recent decline. We have put up with such abuse from him in the past when we still had some stamina left. That kind of abuse now when our stamina is all gone was a little over the top. NO, A lot over the top. No, he wasn't better or getting better. He has Alzheimer's disease and won't get better. But if the spike in alertness lasted we would be facing some really challenging days and bigger decisions about his care. Would we keep him longer to postpone the fight over a nursing home? We would both have mental breakdowns before the weekend was over? Would we place him in a home sooner, any home, to stave off that breakdown? Yes, the line is now very taut. I wanted to give him to my brother for his birthday, I really, really did, but he said he wouldn't take him anyway, so that was out. What to do about Dad?
Good news, the meds or whatever wore off in two days. He no longer remembers being in the hospital. He is back to near incoherence. He is back to placidity. The rope is a little less taut and we can breathe. I assure everyone who is on the sidelines wondering about my attitude that unless they have lived in the same house for 3 years with an Alzheimer's patient who has run the gamut from violently abusive to babblingly repetitious, they had better not make a comment or judgment at all. To anyone who thinks we should just dig deeper for more strenght, please take him for a month while my bride and I try to find where deeper is?
What about the nursing home wait? We are still waiting. Right now it doesn't seem he will make it there by the first of November. That was supposed to be a birthday gift to my bride. Anyway, with that realization in mind we are ready to stay the course as long at it requires. There must be strength there somewhere. My bride and I have talked about it and that is just the way things are and that is just how life is. Thank God there is a God, and He will be with us through this today, tomorrow and as long as it takes. That is our sunhine in Dad's descent.
Thursday, September 11, 2008
Waiting
Now that Dad has officially been placed on the list for a local nursing home, the wait begins. There are a whole lot of nursing homes in our county. We visited all but one of them. The one we didn't visit had no one give me even a small recommendation of its quality. We had tours, talked with nursing directors, got papers, went on line to the official government web site for nursing homes and prayed and looked some more. We are happy with our decision, but it may be a while before we realize it.
This summer was a horrible one in our area weather wise. It began in May with a huge tornado that killed eight people and destroyed hundreds of homes and damaged hundreds more to a great extent. Our area is populated by elderly people. Many of them lived in these homes. Their children would come in multiple times a week to check on mom and dad and take general care of them. Now there are no homes for mom and dad to live in. The children cannot take them into their own homes. The result is that nursing homes were suddenly inundated with new residents. That was round one. Three weeks later a 500 year flood hit our area. The water rose and rose and rose. It was 3 blocks from our house and we live on a hill seven blocks from the river. The storm drains on our block were starting to back up and put water into our street. Hundreds of homes in our city were hit hard. Again, we are an older area and the same as with the tornado, seniors who were barely managing in their homes with the help of their children were displaced into nursing homes. Because they were seniors in need of assistance anyway, it is unlikely that any of them will be rebuilding their homes and returning there. Nursing homes in our area are stuffed.
We are on the waiting list. How long? Dad needs nursing home care. It is apparent every day. We have been providing him nursing home level care for 3 years. The toll is starting to show. How long? We have added a home health aide to the mix of his care. She comes twice weekly to bathe him. The visiting nurse now comes twice monthly instead of once monthly. How long? It is possible that he has had one or more TIA's (small strokes) this summer, but that is difficult to determine. It is common at his level of need to have them and there are some signs that he has. How long? He is increasingly confused and communication is less clear. He can process almost nothing which is said to him anymore. How long? We have committed to taking care of him as long as it takes. We are also hoping that it isn't that much longer. Our goal was to have him placed by November 1. That is still our goal. How long? The whole situation has racheted up the stress level. It is beginning to be our descent, not just his. How long? As long as it takes. That is the way it is with family. We will be there to be the sunshine in his descent as long at it takes. (But hopefully, it will be by November 1.) :)
This summer was a horrible one in our area weather wise. It began in May with a huge tornado that killed eight people and destroyed hundreds of homes and damaged hundreds more to a great extent. Our area is populated by elderly people. Many of them lived in these homes. Their children would come in multiple times a week to check on mom and dad and take general care of them. Now there are no homes for mom and dad to live in. The children cannot take them into their own homes. The result is that nursing homes were suddenly inundated with new residents. That was round one. Three weeks later a 500 year flood hit our area. The water rose and rose and rose. It was 3 blocks from our house and we live on a hill seven blocks from the river. The storm drains on our block were starting to back up and put water into our street. Hundreds of homes in our city were hit hard. Again, we are an older area and the same as with the tornado, seniors who were barely managing in their homes with the help of their children were displaced into nursing homes. Because they were seniors in need of assistance anyway, it is unlikely that any of them will be rebuilding their homes and returning there. Nursing homes in our area are stuffed.
We are on the waiting list. How long? Dad needs nursing home care. It is apparent every day. We have been providing him nursing home level care for 3 years. The toll is starting to show. How long? We have added a home health aide to the mix of his care. She comes twice weekly to bathe him. The visiting nurse now comes twice monthly instead of once monthly. How long? It is possible that he has had one or more TIA's (small strokes) this summer, but that is difficult to determine. It is common at his level of need to have them and there are some signs that he has. How long? He is increasingly confused and communication is less clear. He can process almost nothing which is said to him anymore. How long? We have committed to taking care of him as long as it takes. We are also hoping that it isn't that much longer. Our goal was to have him placed by November 1. That is still our goal. How long? The whole situation has racheted up the stress level. It is beginning to be our descent, not just his. How long? As long as it takes. That is the way it is with family. We will be there to be the sunshine in his descent as long at it takes. (But hopefully, it will be by November 1.) :)
Sunday, August 24, 2008
The Decision
Dad has now been with us just a little less than 3 years. To put that in perspective, that has been the graduation from high school of one child, college of 2 children and myself (my masters), the birth of 2 grandchildren, a third was born a week before he came, the marriage of two children, the changing of my primary employment, the death of our long time family dog (15 years) and the arrival of our newest family member (now a year and a half ago - Molly the dog). There has not been a shortage of things going on in our lives. Upheaval can be best used to describe our lives over the past 34 months. During these normally stressful events we have made adjustments to Dad's disease as he has progressed from late stage 4 to mid-stage 6 Alzheimer's.
The first adjustment was to having him here. The second was to him not wanting to be here. He was always, and I don't mean usually, very nasty to me in particular, tantrums, swearing, arguing, any means of expressing his disapproval of the new situation. I could wake up in the morning with the clear expectation of more verbal abuse. There was the adjustment to me being the parent of a not so cooperative 81 year old man and making decisions for which there had been no progressive preparation. We had to find him activities outside our home for both his and our survival. We had to fight with him to go to these activities until they became a habit, only to have that habit broken as we took some respite and have to start all over again.
Adjustments, adjustments, adjustments. I could have been a chiropractor. At each skill level change we made adjustments. As each mental acuity level changed we had to make adjustments. He cannot adjust. The care giver adjusts. As he began to communicate differently we adjusted to keep communication open. As his perceptions abruptly changed, we adjusted to keep within the scope of "his reality". For a while it seemed to be the "reality du jour". Any expectations of him changed into adjustments for us. All the while our own life adjusted around us in a myriad of swirling changes demanding our attention. At the end of six months we were exhausted. At the end of three years - well, I can't even describe how we are.
As recorded earlier Dad's health changed on my birthday. That is now a month and a half ago and he still daily says, "I don't feel well." He has been to the doctor, the hospital, seen the visiting nurse multiple times and in every case been declared "Healthy and fine." Still the mantra is, "I don't feel well." "I don't feel well," can mean, "I am not going to church today", "I am not going to adult day care today," or "I am not going to do anything at all but sit here in my chair and die." My lovely bride has been pushed past her capacity to care for him for the past 3 years and now the very limited activities which she is allowed during his time at adult day care are jeopardized by, "I don't feel well." She never, ever, has complained. She hasn't complained now. But the extra stress is visible. The time has come. The decision has been made. We have been adjusted to the limit. Another adjustment would cause breakage.
Tomorrow we have our final visit to a nursing home. We have examined homes for the past 3 years knowing that the final time would come. We had no idea how we would know when that time had come, but we knew it eventually would. Last week I said to my bride, "The time has come." She smiled, "I thought that a week ago." She had never said a word. There was no one final major issue. There was no line in the sand that was crossed. All of our wondering how we would know was simply summed up in the one sentence. "I know it is time." We have no guilt. We know it is time. The time may take 2 more months. Now that we know, we have to wait for an opening. But, the peace of knowing will be an enablement for the duration. We can say without any hesitation any longer that he will be better off in a home. He will have new people to talk to, to share his limited repertoire of stories with. He will have 24 hour nursing care when he doesn't feel well. (He has always been a terrible hypochondriac - this should be great.) We finally see someone else being able to provide his care and do it better than we can. It will be a new sunshine in his descent. And, it will be some sunshine for us before we collapse under the weight of his descent. There is a time for every purpose under heaven. It is time.
The first adjustment was to having him here. The second was to him not wanting to be here. He was always, and I don't mean usually, very nasty to me in particular, tantrums, swearing, arguing, any means of expressing his disapproval of the new situation. I could wake up in the morning with the clear expectation of more verbal abuse. There was the adjustment to me being the parent of a not so cooperative 81 year old man and making decisions for which there had been no progressive preparation. We had to find him activities outside our home for both his and our survival. We had to fight with him to go to these activities until they became a habit, only to have that habit broken as we took some respite and have to start all over again.
Adjustments, adjustments, adjustments. I could have been a chiropractor. At each skill level change we made adjustments. As each mental acuity level changed we had to make adjustments. He cannot adjust. The care giver adjusts. As he began to communicate differently we adjusted to keep communication open. As his perceptions abruptly changed, we adjusted to keep within the scope of "his reality". For a while it seemed to be the "reality du jour". Any expectations of him changed into adjustments for us. All the while our own life adjusted around us in a myriad of swirling changes demanding our attention. At the end of six months we were exhausted. At the end of three years - well, I can't even describe how we are.
As recorded earlier Dad's health changed on my birthday. That is now a month and a half ago and he still daily says, "I don't feel well." He has been to the doctor, the hospital, seen the visiting nurse multiple times and in every case been declared "Healthy and fine." Still the mantra is, "I don't feel well." "I don't feel well," can mean, "I am not going to church today", "I am not going to adult day care today," or "I am not going to do anything at all but sit here in my chair and die." My lovely bride has been pushed past her capacity to care for him for the past 3 years and now the very limited activities which she is allowed during his time at adult day care are jeopardized by, "I don't feel well." She never, ever, has complained. She hasn't complained now. But the extra stress is visible. The time has come. The decision has been made. We have been adjusted to the limit. Another adjustment would cause breakage.
Tomorrow we have our final visit to a nursing home. We have examined homes for the past 3 years knowing that the final time would come. We had no idea how we would know when that time had come, but we knew it eventually would. Last week I said to my bride, "The time has come." She smiled, "I thought that a week ago." She had never said a word. There was no one final major issue. There was no line in the sand that was crossed. All of our wondering how we would know was simply summed up in the one sentence. "I know it is time." We have no guilt. We know it is time. The time may take 2 more months. Now that we know, we have to wait for an opening. But, the peace of knowing will be an enablement for the duration. We can say without any hesitation any longer that he will be better off in a home. He will have new people to talk to, to share his limited repertoire of stories with. He will have 24 hour nursing care when he doesn't feel well. (He has always been a terrible hypochondriac - this should be great.) We finally see someone else being able to provide his care and do it better than we can. It will be a new sunshine in his descent. And, it will be some sunshine for us before we collapse under the weight of his descent. There is a time for every purpose under heaven. It is time.
Saturday, August 02, 2008
Weathering the Storms
Wow! It's been over a month. That is not exactly because nothing has been happening. I lead this exciting secret double life. Caregiver by evening and doubly employed during the day. If it weren't for my bride, care for Dad would be scarce. Kudos to her for all her hard labor. She is the daily sunshine in his descent. A lot to do in both jobs this summer plus care giving is one of the storms we have had. That is largely our storm, though, and not his.
This summer has seen a great decline in Dad. People at church have noticed it. The visiting nurse has noticed it. Family members have noticed it. Other friends have noticed it. Oh, he does have those amazing days when he is seemingly "all there", but they are like a streak of lightning in a dark night. Lots of momentary dazzle and then greater darkness than before.
The decline here is the mental decline, the lack of ability to perceive his surroundings, communicate, care about his appearance, interact meaningfully, and all that goes with mental decline. What remains is the persistence about getting married to his girl friend, his deep memories of childhood and family, his delight in seeing the great grandchildren come over. He does really enjoy that.
There has been another decline. This has been physical. On my birthday in mid-July he complained of feeling "not well". That is a little vague, but he is a little vague. Sometimes he felt a little dizzy. Others a "bit off in his mind." (I couldn't have agreed with him more!) Then he would feel great again. The spells came and went so fast that I had no clue what to do. Both my brother and sister were here for the day and were equally baffled about a solution. The next day he wouldn't go to church. Kudos here again for my bride. She took him to the emergency room while I took care of responsibilities at church. The emergency room doctor declared him fine, though Dad was outraged that the "_________ dumb doctor couldn't find out why I am sick." He was up and down in his feelings for several days. We took him to the doctor and had the visiting nurse see him twice that week. It is his blood pressure. It is perfectly normal after having been marginally high for years. He feels light headed because he is healthy. Go figure. That was a rather big storm because he couldn't communicate exactly the problem, could not understand at all the doctors' comments, could not remember having seen the doctor and could not accept what we told him about how he was OK. He still feels a little off and we don't know if it is legit or not. Is it serious. Has something else come up in his body. The physical questions are starting to eclipse the mental ones.
Upshot? Recommendations are now coming in from friends, church members (who, of course, are also friends), family and health care providers that it is time to put him in a home. Wow! This is a storm of a different kind. Are they all right? Are we being stubborn in keeping him here? Do we have a better understanding than everyone else? When he first came some people who supervise my work were adamant that I should put him in a home then. They were afraid and have remained afraid that my work would suffer from fulfilling a true family obligation. Their attitude rather inured me from listening to advice from people with other agendas. Then it inured me from listening to advice from people critical to having him in our home period. After a time, perhaps, I have come to the place where I have lost the ability to take another's legitimate perspective on what is best for both us and him. I can hear my supervisors' haughty voices saying, "See we told you this two and a half years ago." I can also hear the comments of others, "Oh, now that it is getting difficult you want to cut and run!! Humph!!" Caught in the middle. Well, I am a tweener. It started as being between the generation still living at home with us (now all married and gone) and having an older generation move in. Now it seems to be between a rock and a hard place in making critical decisions. That is the storm. Dad is oblivious to it as he is now oblivious to most things. It is by all accounts, my call. The weather seems a little rocky with more storms ahead. Stay tuned.
This summer has seen a great decline in Dad. People at church have noticed it. The visiting nurse has noticed it. Family members have noticed it. Other friends have noticed it. Oh, he does have those amazing days when he is seemingly "all there", but they are like a streak of lightning in a dark night. Lots of momentary dazzle and then greater darkness than before.
The decline here is the mental decline, the lack of ability to perceive his surroundings, communicate, care about his appearance, interact meaningfully, and all that goes with mental decline. What remains is the persistence about getting married to his girl friend, his deep memories of childhood and family, his delight in seeing the great grandchildren come over. He does really enjoy that.
There has been another decline. This has been physical. On my birthday in mid-July he complained of feeling "not well". That is a little vague, but he is a little vague. Sometimes he felt a little dizzy. Others a "bit off in his mind." (I couldn't have agreed with him more!) Then he would feel great again. The spells came and went so fast that I had no clue what to do. Both my brother and sister were here for the day and were equally baffled about a solution. The next day he wouldn't go to church. Kudos here again for my bride. She took him to the emergency room while I took care of responsibilities at church. The emergency room doctor declared him fine, though Dad was outraged that the "_________ dumb doctor couldn't find out why I am sick." He was up and down in his feelings for several days. We took him to the doctor and had the visiting nurse see him twice that week. It is his blood pressure. It is perfectly normal after having been marginally high for years. He feels light headed because he is healthy. Go figure. That was a rather big storm because he couldn't communicate exactly the problem, could not understand at all the doctors' comments, could not remember having seen the doctor and could not accept what we told him about how he was OK. He still feels a little off and we don't know if it is legit or not. Is it serious. Has something else come up in his body. The physical questions are starting to eclipse the mental ones.
Upshot? Recommendations are now coming in from friends, church members (who, of course, are also friends), family and health care providers that it is time to put him in a home. Wow! This is a storm of a different kind. Are they all right? Are we being stubborn in keeping him here? Do we have a better understanding than everyone else? When he first came some people who supervise my work were adamant that I should put him in a home then. They were afraid and have remained afraid that my work would suffer from fulfilling a true family obligation. Their attitude rather inured me from listening to advice from people with other agendas. Then it inured me from listening to advice from people critical to having him in our home period. After a time, perhaps, I have come to the place where I have lost the ability to take another's legitimate perspective on what is best for both us and him. I can hear my supervisors' haughty voices saying, "See we told you this two and a half years ago." I can also hear the comments of others, "Oh, now that it is getting difficult you want to cut and run!! Humph!!" Caught in the middle. Well, I am a tweener. It started as being between the generation still living at home with us (now all married and gone) and having an older generation move in. Now it seems to be between a rock and a hard place in making critical decisions. That is the storm. Dad is oblivious to it as he is now oblivious to most things. It is by all accounts, my call. The weather seems a little rocky with more storms ahead. Stay tuned.
Wednesday, June 25, 2008
My Least Favorite Question
How's your dad? That is my least favorite question. It always implies in my mind that the asker doesn't know anything about Dad or his disease. Since the answer can never be "better" there are few other options for an answer. He could be the same, but even that is technically not true. He is simply declining. That is the answer, "Declining". How tough can it be for people to figure out that answer? A better question would be, "How does your dad think he is today?" Healed, fine, ready to get a job, ready to get married to a lady whose name he doesn't even know. How does he think he is today? No where close to how he is. He is daily less articulate. He is daily less able to process a conversation of even a few words loudly and slowly spoken.
He is basically stuck in a rut of two avenues of monologue. There is no real dialogue, just his own rambling monologue begun at random and ending at random. He either talks about when he was a boy his grandparents had 14 children and they all got together every Sunday. That avenue is almost daily. When our son in law comes to visit the conversation goes to the war. He does remember, amazingly since he doesn't remember anything else that has happened in the past 20 years, that our son in law is in the service. Therefore, when he shows up the avenue automatically shifts to when he was in the war. Since our son in law usually shows up at mealtime, the avenue of thought is simple. In the war we had good food.
The other day a friend who has come weekly for 2 years to play cards with Dad every Tuesday came to play cards. Dad looked at him without recognition. When I told Dad that he should go get his cards he just stared at me. He was absolutely lost. Finally I went and got his cards because he never processed the simple sentence, "Go get your cards." Four one syllable words. Repeated several times with good volume. He just stared. Yesterday was Tuesday. His friend was here again. After he left I asked Dad who had won? He just stared. I repeated more slowly, "who won the card game?" He just stared. Then he started rambling about something that happened at day care center. He was incoherent so I don't know what he was trying to say. The center was the only piece I picked up. I asked him again, "Who won the card game?" What card game? he wondered with a mutter. "The card game you have been playing at this table." He just stared. The good news was that after the question was repeated one more time, he answered, "He did."
Why is it like this? I think there are thoughts in his mind that he is trying to grab. He can't snatch them from his own mind to speak them clearly. While he is trying to snatch those thoughts from his mind, he can't process at all any other input. His mind is working to get at something that he cannot retrieve. In the process it shuts off all other sensory input. The ears don't hear because the mind is elsewhere. As a result he is becoming increasingly closed off from both himself and others. One bit of good news to conclude. His sister who also suffers from Alzheimer's is finally getting some care. Her caregivers have not been providing any at all for the past 2 or more years. Someone turned them in to DHS. Now they are starting to do something for her. One thing has been to take her to the same adult day care center that Dad attends. She has been there the past 2 days. I hope they keep it up. She needs it (she is at least as far along in the disease as Dad) and he is brightened by her presence.
He is basically stuck in a rut of two avenues of monologue. There is no real dialogue, just his own rambling monologue begun at random and ending at random. He either talks about when he was a boy his grandparents had 14 children and they all got together every Sunday. That avenue is almost daily. When our son in law comes to visit the conversation goes to the war. He does remember, amazingly since he doesn't remember anything else that has happened in the past 20 years, that our son in law is in the service. Therefore, when he shows up the avenue automatically shifts to when he was in the war. Since our son in law usually shows up at mealtime, the avenue of thought is simple. In the war we had good food.
The other day a friend who has come weekly for 2 years to play cards with Dad every Tuesday came to play cards. Dad looked at him without recognition. When I told Dad that he should go get his cards he just stared at me. He was absolutely lost. Finally I went and got his cards because he never processed the simple sentence, "Go get your cards." Four one syllable words. Repeated several times with good volume. He just stared. Yesterday was Tuesday. His friend was here again. After he left I asked Dad who had won? He just stared. I repeated more slowly, "who won the card game?" He just stared. Then he started rambling about something that happened at day care center. He was incoherent so I don't know what he was trying to say. The center was the only piece I picked up. I asked him again, "Who won the card game?" What card game? he wondered with a mutter. "The card game you have been playing at this table." He just stared. The good news was that after the question was repeated one more time, he answered, "He did."
Why is it like this? I think there are thoughts in his mind that he is trying to grab. He can't snatch them from his own mind to speak them clearly. While he is trying to snatch those thoughts from his mind, he can't process at all any other input. His mind is working to get at something that he cannot retrieve. In the process it shuts off all other sensory input. The ears don't hear because the mind is elsewhere. As a result he is becoming increasingly closed off from both himself and others. One bit of good news to conclude. His sister who also suffers from Alzheimer's is finally getting some care. Her caregivers have not been providing any at all for the past 2 or more years. Someone turned them in to DHS. Now they are starting to do something for her. One thing has been to take her to the same adult day care center that Dad attends. She has been there the past 2 days. I hope they keep it up. She needs it (she is at least as far along in the disease as Dad) and he is brightened by her presence.
Sunday, June 01, 2008
It shows more and more
It has been a while, but not for lack of news. In May I received an advanced degree and took my bride on a nice trip to receive the degree at the ceremony. (If I pay for it and work for it, I'm showing up to get it.) My brother kindly took a week plus off of work to stay with Dad. That had not been the original plan, but we have to be flexible. He was supposed to stay in a respite care facility for 10 days while we were gone. Then it was upped to 14 days (not because we were gone that long, just because there was a minimal stay.) Then it was upped to 30 day minimum stay and that seemed like too much. After talking it over with my brother and agreeing that he would never be able to come home after such a long stay, my brother said he would stay with him for the 9 days we were gone. With that resolved we left on the most wonderful vacation we have had in years!
In the days leading up to the trip Dad would ask repeatedly if he could go along. We assured him he would have a better time here than with us. How very very true. We hiked 4 or more miles daily at planned hiking stops along the way. We drove with the windows down and sucked in the beautiful honeysuckle filled southern air. He hates to have the windows down. We could talk to each other and understand the conversation. That was rare. Oh, what a wonderful time alone!! And he did have a good time with his other son. They played cards and went places in the afternoon after adult day care. I am sure he was overjoyed each day to have us gone. But, before the trip when he was asking to go along he was always talking about how proud he was of my graduation. He told people at church. He would beam.
The day after we arrived home we had the pictures of our trip developed. Yes, we still live in the technological stone age. When we brought them home we showed them to Dad. He looked at the graduation pictures and asked, "when did you do that?" I told him, "just last week." "well, I never knew anything about it," he said with chagrin. When I was showing the pictures to some friends two days later, he was captivated by them. He had never seen them before.
That is what we noticed most of all. We have lived with him 24/7 for 2 and 1/2 years. We have grown used to his decline to the point that it often seems normal behavior. We have never had this kind of opportunity to step back and see what is going on. WOW!! His decline was so much more noticeable to us upon our return. I know that I often comment on his decline and how much we notice it. But the truth is that we hadn't noticed the half of it. Perhaps we had even been caught up in some aspects of denial about the real nature of his condition. I don't see a real relevant practical application to this new perspective, but it is eye opening to the degree that it has taken place. The upside, and there is one, is that he had a good time. He may not remember my brother having been here for 9 days, or he may. Choose the moment to ask and take your options from the above choices or others that Dad may create and you will have your answer. Whether he remembers or not, however, is not relevant. At the time my brother was here, Dad was having the time of his life - moment by moment. That is his sunshine in his decline.
In the days leading up to the trip Dad would ask repeatedly if he could go along. We assured him he would have a better time here than with us. How very very true. We hiked 4 or more miles daily at planned hiking stops along the way. We drove with the windows down and sucked in the beautiful honeysuckle filled southern air. He hates to have the windows down. We could talk to each other and understand the conversation. That was rare. Oh, what a wonderful time alone!! And he did have a good time with his other son. They played cards and went places in the afternoon after adult day care. I am sure he was overjoyed each day to have us gone. But, before the trip when he was asking to go along he was always talking about how proud he was of my graduation. He told people at church. He would beam.
The day after we arrived home we had the pictures of our trip developed. Yes, we still live in the technological stone age. When we brought them home we showed them to Dad. He looked at the graduation pictures and asked, "when did you do that?" I told him, "just last week." "well, I never knew anything about it," he said with chagrin. When I was showing the pictures to some friends two days later, he was captivated by them. He had never seen them before.
That is what we noticed most of all. We have lived with him 24/7 for 2 and 1/2 years. We have grown used to his decline to the point that it often seems normal behavior. We have never had this kind of opportunity to step back and see what is going on. WOW!! His decline was so much more noticeable to us upon our return. I know that I often comment on his decline and how much we notice it. But the truth is that we hadn't noticed the half of it. Perhaps we had even been caught up in some aspects of denial about the real nature of his condition. I don't see a real relevant practical application to this new perspective, but it is eye opening to the degree that it has taken place. The upside, and there is one, is that he had a good time. He may not remember my brother having been here for 9 days, or he may. Choose the moment to ask and take your options from the above choices or others that Dad may create and you will have your answer. Whether he remembers or not, however, is not relevant. At the time my brother was here, Dad was having the time of his life - moment by moment. That is his sunshine in his decline.
Thursday, May 08, 2008
Miscellany
I used to blog weekly. Things used to happen weekly. New things. Often depressing things. Sad things. Angry things. I don't miss sad, angry depressing things at all. Something occasionally new, however, would be a nice break. That means that things are pretty much routine. He talks about marrying his girlfriend every now and then. Sometimes more than others. Some weeks hardly at all. It is almost like he has forgotten her. Then, wham, he talks about it daily. Last week he wanted to drive again. This week he wanted to get a job. Hurray! When he couldn't do either, and I didn't tell him he couldn't, I just ignored his comments, he forgot about them almost immediately and there was no lingering anger. But the comments were nothing new. Even the lack of anger is not new anymore. His emotions are quite flat.
He told me yesterday about wanting to marry his girlfriend. He said that I should meet her. I told him that I have met her. He said that he had wished that he were there when I met her. I told him that he had been there when I met her. He said, oh, I don't remember that. End of conversation. This week he wanted to clean the porch. He did a good job. He hasn't shown much initiative lately, so this was something almost new. He used to ask to clean the porch frequently. So, it was something he has done but has shown almost no interest in doing again. Then he wanted to. We might call his current condition a hiccup in his overall decline. He is having a slightly brighter spell after a long decline. Two years ago when these episodes occurred I thought the doctors might have been wrong in their initial assessment. Now I know that hiccups happen.
It is sometimes like a daily "Flowers for Algernon" scenario. It is still strange however to see him barely function for days or weeks and then act like a nearly normal eighty-something for a few days and then revert to struggling to speak, think and respond. I think that I have come to hate hiccups. They seem more emotionally traumatizing to him than the process of decline. When he is clear he wants things that he cannot have. When he is in noticeable decline he doesn't usually want things, except to marry his girlfriend. When he is clear he wants to know why he can't. When he isn't clear he just accepts that it will have to wait a little longer to take place. There are days when I don't know who is having the slower death, the patient or the caregiver. The long goodbye is very long. In this regard there is no real sunshine in the descent.
He told me yesterday about wanting to marry his girlfriend. He said that I should meet her. I told him that I have met her. He said that he had wished that he were there when I met her. I told him that he had been there when I met her. He said, oh, I don't remember that. End of conversation. This week he wanted to clean the porch. He did a good job. He hasn't shown much initiative lately, so this was something almost new. He used to ask to clean the porch frequently. So, it was something he has done but has shown almost no interest in doing again. Then he wanted to. We might call his current condition a hiccup in his overall decline. He is having a slightly brighter spell after a long decline. Two years ago when these episodes occurred I thought the doctors might have been wrong in their initial assessment. Now I know that hiccups happen.
It is sometimes like a daily "Flowers for Algernon" scenario. It is still strange however to see him barely function for days or weeks and then act like a nearly normal eighty-something for a few days and then revert to struggling to speak, think and respond. I think that I have come to hate hiccups. They seem more emotionally traumatizing to him than the process of decline. When he is clear he wants things that he cannot have. When he is in noticeable decline he doesn't usually want things, except to marry his girlfriend. When he is clear he wants to know why he can't. When he isn't clear he just accepts that it will have to wait a little longer to take place. There are days when I don't know who is having the slower death, the patient or the caregiver. The long goodbye is very long. In this regard there is no real sunshine in the descent.
Saturday, April 19, 2008
Under the weather, Joe
Shortly after our last blog, Dad got a cold. Colds don't go away as fast at 84 as for younger people. Colds are not as well understood by an Alzheimer's patient as by a person who fully knows what is going on. Bottom line, he will live and he has that figured out now. We took him to the doctor who assured him it was just a cold. That, of course, was relatively pointless because he never hears or understands anything the doctor says. The doctor did give him some pills and that made him happy. Going to the doctor also served a second purpose. Dad had refused to go to the adult care center for the day and would have continued to refuse going until he "died". But we could tell him, and did tell him, that the doctor assured him it was just a cold and he was well enough to go. That meant that he missed only one day. Two or three days would have been catastrophic.
It has now been 2 1/2 years that he has lived with us. When he came he was in late stage 4. There are 7 stages. The Alzheimer's guide said that he should move from there to stage 6 in 6 to 18 months. At the end of March we took inventory of his progress. He now has a check by all the signs of stage 5 and is starting into stage 6. Both his short and long term memories are now impaired. He is becoming incontinent. His speech lacks much more focus than before and he can not carry on a conversation that one would consider a conversation. He is increasingly opposed to cleanliness and we have to devise ways to make him even wash his hands. He does get into the shower, but he doesn't really wash. I had to put him into the shower a few weeks ago and he has been more cooperative about at least getting in since. Leading him to the bathroom and getting him to undress and get into the shower was an experience I don't want to repeat. That is a step that will only increase in necessity in the future. All his skills are slowing down which means that he is nearing the tipping point of needing professional nursing care.
Yesterday I took my bride to see her dad. He is 82 and lives a few hours away. We had a wonderful day visiting and talking over a variety of things. It was sooooooooooo refreshing to carry on a real conversation. I had almost forgotten that parents could be so clear, rational and conversant. Her dad is a snow bird so we haven't seen him since late October. He just returned from fun in the sun. What a difference between a healthy older brain and a brain afflicted with Alzheimer's. That, in a nutshell, is the difference between the sunshine and the descent.
It has now been 2 1/2 years that he has lived with us. When he came he was in late stage 4. There are 7 stages. The Alzheimer's guide said that he should move from there to stage 6 in 6 to 18 months. At the end of March we took inventory of his progress. He now has a check by all the signs of stage 5 and is starting into stage 6. Both his short and long term memories are now impaired. He is becoming incontinent. His speech lacks much more focus than before and he can not carry on a conversation that one would consider a conversation. He is increasingly opposed to cleanliness and we have to devise ways to make him even wash his hands. He does get into the shower, but he doesn't really wash. I had to put him into the shower a few weeks ago and he has been more cooperative about at least getting in since. Leading him to the bathroom and getting him to undress and get into the shower was an experience I don't want to repeat. That is a step that will only increase in necessity in the future. All his skills are slowing down which means that he is nearing the tipping point of needing professional nursing care.
Yesterday I took my bride to see her dad. He is 82 and lives a few hours away. We had a wonderful day visiting and talking over a variety of things. It was sooooooooooo refreshing to carry on a real conversation. I had almost forgotten that parents could be so clear, rational and conversant. Her dad is a snow bird so we haven't seen him since late October. He just returned from fun in the sun. What a difference between a healthy older brain and a brain afflicted with Alzheimer's. That, in a nutshell, is the difference between the sunshine and the descent.
Sunday, March 30, 2008
The Underwear Inventory
If it weren't for my lovely bride, Dad would be in a home. That isn't just true of now. Taking care of an Alzheimer's patient is not routine work. The things that she does take a lot of time, energy and patience. At the outset, when Dad first moved in, we had gone over a list of things that if he did them, he would have to go to a home. How little did we know then what love and care really meant. While it isn't that I don't have a fair number of responsibilities with my dad, my bride has and does the lion's share of the care. As the disease progresses, so does the load.
One thing that plagues my dad is bowel accidents. Now, they are nobody's favorite topic or event, but they are a frequent part of Dad's life. When he came to live with us 2 1/2 years ago, they were part of his life then, but not to any extent what they are today. It is not uncommon to have an accident 4 or 5 times a week. It is how he deals with them that creates the topic of this blog. When he has an accident in the middle of the night, he goes to his bathroom and rinses out his dirty underwear. (No, he doesn't shower himself, just rinses his underwear and maybe rinses himself as well.) Then he returns his underwear to his room where he hangs them somewhere, wherever he may choose at the time, to dry. A couple of hours later he will wake up again and take the damp underwear down and hide them.
He might stick them in his underwear drawer with the clean ones. He might hide them in the spare bottom drawer of his dresser. He might hide them in the bathroom cabinet. He might hide them under his TV. He might hide them under the cover on the back of his computer chair. I know that he might hide them in all of those places because he has. The next morning he will bring to the laundry room his dirty t-shirt and socks from the previous day. Then my bride has to pay careful attention to the wash. Where, oh where, are the underpants? She has to take an inventory of his dirty clothes daily. If the underwear is not there, she has to go find them. Some days it is easy. The bottom drawer had been his favorite place, but he is getting more creative. Last week she had to search for almost 3 hours to find them. She almost came to the conclusion that he had worn two pairs that day, but she persisted because the smell told her that he had a dirty pair somewhere.
Yes, the smell. Accidents produce that. They produce dirty bed linens also which increases her wash load daily. Besides the smell, however, is the challenge of finding which pair is dirty if he puts them back into the clean underwear drawer. That is accomplished by having to have an underwear inventory. She knows which pair he wears everyday so she can tell which pair he wore yesterday. That is a job that requires a lot of love. I am a lucky man! It also, though, requires from her a lot of time, the biggest commodity required for caregivers of an Alzheimer's patient. No, we can't get him to change what he does and just put his dirty undies in a basket. He vehemently denies that he has ever had an accident or that if he, that he would do such a thing as to hide the underwear. That is his reality. Being the queen of underwear inventory is the reality for my bride. That might not be the sunshine, but it is the reality of descent with Alzheimer's disease.
One thing that plagues my dad is bowel accidents. Now, they are nobody's favorite topic or event, but they are a frequent part of Dad's life. When he came to live with us 2 1/2 years ago, they were part of his life then, but not to any extent what they are today. It is not uncommon to have an accident 4 or 5 times a week. It is how he deals with them that creates the topic of this blog. When he has an accident in the middle of the night, he goes to his bathroom and rinses out his dirty underwear. (No, he doesn't shower himself, just rinses his underwear and maybe rinses himself as well.) Then he returns his underwear to his room where he hangs them somewhere, wherever he may choose at the time, to dry. A couple of hours later he will wake up again and take the damp underwear down and hide them.
He might stick them in his underwear drawer with the clean ones. He might hide them in the spare bottom drawer of his dresser. He might hide them in the bathroom cabinet. He might hide them under his TV. He might hide them under the cover on the back of his computer chair. I know that he might hide them in all of those places because he has. The next morning he will bring to the laundry room his dirty t-shirt and socks from the previous day. Then my bride has to pay careful attention to the wash. Where, oh where, are the underpants? She has to take an inventory of his dirty clothes daily. If the underwear is not there, she has to go find them. Some days it is easy. The bottom drawer had been his favorite place, but he is getting more creative. Last week she had to search for almost 3 hours to find them. She almost came to the conclusion that he had worn two pairs that day, but she persisted because the smell told her that he had a dirty pair somewhere.
Yes, the smell. Accidents produce that. They produce dirty bed linens also which increases her wash load daily. Besides the smell, however, is the challenge of finding which pair is dirty if he puts them back into the clean underwear drawer. That is accomplished by having to have an underwear inventory. She knows which pair he wears everyday so she can tell which pair he wore yesterday. That is a job that requires a lot of love. I am a lucky man! It also, though, requires from her a lot of time, the biggest commodity required for caregivers of an Alzheimer's patient. No, we can't get him to change what he does and just put his dirty undies in a basket. He vehemently denies that he has ever had an accident or that if he, that he would do such a thing as to hide the underwear. That is his reality. Being the queen of underwear inventory is the reality for my bride. That might not be the sunshine, but it is the reality of descent with Alzheimer's disease.
Tuesday, March 18, 2008
Birthday Boy
Hello, again. It has been quite a while since I have blogged. Mea culpa. Just a brief note before I begin. Someday I will learn how to edit my own bio on the side panel, but until then I will just make a note about changes in it. My bride and I no longer have a child at home. She has graduated and been married. We also now have 4 grandchildren. Does that make us a double 'tween generation. We see our children several times a week and two of our grandchildren also several times a week. (2 of them sadly live too far away.) Our home remains the focal family point for 4 generations. Our youngest son is getting married in 3 months so we will add a new daughter-in-law to the mix. In addition to family my employment status has changed since my last blog. I have taken on a new title at work with the requisite amount of new work to go along with it. I also changed titles as my other job, but that didn't increase the work load but actually gave me a slightly lighter load.
Last week it was Dad's birthday. He was 81 when he came to us. Now he is 84. Reflecting on that is rather overwhelming. We never thought he would even be here 6 months. Then we stretched it to a year. Wow! Time has flown! His memory has failed increasingly in that time. He has forgotten that he has a wife in a nursing home and still plans to marry his new sweetheart at the adult day care center. He has been talking about that now for 7 months but has forgotten that as well. He still tells us that he only met her there a few weeks ago, about 3 or 4 he will say. He still gets angry occasionally about having to go to the center, but his anger dissipates rapidly unlike when he first came and could hang on to it for days on end. His sister, who also suffers from Alzheimer's, is going into a nursing home soon. I suggested that he might like to go there and live with her, but that upset him a lot, so that is on hold for now.
We had a big party for him on his birthday. There were 12 people here staggered out over a period of time so that he wouldn't be too overwhelmed at once. He talked about that for a few days. He kept saying how much he really enjoyed it. Based on recent experience with his memory we didn't know if he would remember it the next morning, but he did, and the day after that as well. He still doesn't know my bride's name, though. Nor does he remember most people's names, family or otherwise. We never know what he will or won't retain from moment to moment. He got a call for his birthday. When I asked how he liked talking to that person, he said, "I had no idea who it was, but it was nice to talk." A friend came by and gave him a card. This friend sees him weekly. We have called this friend by name for 2 years and put his name on the daily activity board whenever he is coming. He looked at the card, just given to him, saw the name and asked, "Who is _____?" For all that he will pick up a conversation he started yesterday and continue it from where he left off. Of course, we have no idea what he is talking about for a while, and by then he has forgotten what he said. If he says something that we can't understand or follow and we ask him what he just said, overwhelmingly he has no idea. But, he remembered the party and he remembered who came. We are just glad that we could create for him a moment of joy that had a little adhesive on the back.
Last week it was Dad's birthday. He was 81 when he came to us. Now he is 84. Reflecting on that is rather overwhelming. We never thought he would even be here 6 months. Then we stretched it to a year. Wow! Time has flown! His memory has failed increasingly in that time. He has forgotten that he has a wife in a nursing home and still plans to marry his new sweetheart at the adult day care center. He has been talking about that now for 7 months but has forgotten that as well. He still tells us that he only met her there a few weeks ago, about 3 or 4 he will say. He still gets angry occasionally about having to go to the center, but his anger dissipates rapidly unlike when he first came and could hang on to it for days on end. His sister, who also suffers from Alzheimer's, is going into a nursing home soon. I suggested that he might like to go there and live with her, but that upset him a lot, so that is on hold for now.
We had a big party for him on his birthday. There were 12 people here staggered out over a period of time so that he wouldn't be too overwhelmed at once. He talked about that for a few days. He kept saying how much he really enjoyed it. Based on recent experience with his memory we didn't know if he would remember it the next morning, but he did, and the day after that as well. He still doesn't know my bride's name, though. Nor does he remember most people's names, family or otherwise. We never know what he will or won't retain from moment to moment. He got a call for his birthday. When I asked how he liked talking to that person, he said, "I had no idea who it was, but it was nice to talk." A friend came by and gave him a card. This friend sees him weekly. We have called this friend by name for 2 years and put his name on the daily activity board whenever he is coming. He looked at the card, just given to him, saw the name and asked, "Who is _____?" For all that he will pick up a conversation he started yesterday and continue it from where he left off. Of course, we have no idea what he is talking about for a while, and by then he has forgotten what he said. If he says something that we can't understand or follow and we ask him what he just said, overwhelmingly he has no idea. But, he remembered the party and he remembered who came. We are just glad that we could create for him a moment of joy that had a little adhesive on the back.
Saturday, January 26, 2008
Decline
That is the key word in Dad's life these days. Some days it is almost a notable decline from the day before. All the problems of the past are magnified, except, thankfully, his anger. Confusion about what is going on is more noticeable. Understanding of what is being said is a constant. Conversation with him is nearly impossible. Oh, he has a good day and has up moments once in a while, but it is the exception not the rule. His speech is increasingly slurred and he more often than not starts his conversations in the middle and has no idea what the start was. He has virtually stopped responding to my bride at all. Is it a hearing problem or a perception problem? Both and inseparable. Analyzing it is difficult because of it being perceptional. He cannot process what is being asked of him so it is difficult to assess what he is hearing and what he is missing. A question, even one asked loudly, is lost in his mind. He responds in part and that part is usually far from the direction the question was going. He didn't understand. He didn't process the words going in in the order they were asked nor in the way they were construed. It is a repeated supper time ritual for me to look at my bride and ask if she understood anything of what he has just said so that we can make a comment. It is consistent, no she hasn't understood it either.
For all that he is happy. He still has his "girl friend". He still plans to marry her soon. Soon is a very relative term. Each day soon is as far away as yesterday and as close as soon can be. He talks about her less than he did, unless of course he is mumbling something about her that we haven't understood or loudly and clearly stated a random thought about her that had neither beginning or end to its point. Therefore he may be talking about her and we don't know it. But, he is happy. He looks forward to the days his great grandson comes to visit. That is a point on which he can talk with some clarity for some time after the visit. As to his newest great granddaughter he is virtually indifferent. I have never really heard him mention her at all unless she is right in the room. He does remember that my brother has grandchildren. If he wins something at bingo at the adult day care he will bring home toys for the grandchildren, but not the new granddaughter.
While losing more control of his mind he is also losing more control of his body. That is something that seems to cause him embarrassment. That is good in a way. It shows he still has certain areas of awareness. It is bad, too. He cannot help it and he knows it. But, he is happy. That has to be my mantra because it is the sole thing to hold on to in these days of swifter decline. How fast everything will accelerate is still a fool's best guess. He could reach a plateau as he has in the past and stay there for months or more. He could slip and fall and be bedridden for a week and forget how to walk and be in a nursing home and into end stage Alzheimer's in a week. He doesn't know any of this, and he is happy. He is his own sunshine in his descent.
For all that he is happy. He still has his "girl friend". He still plans to marry her soon. Soon is a very relative term. Each day soon is as far away as yesterday and as close as soon can be. He talks about her less than he did, unless of course he is mumbling something about her that we haven't understood or loudly and clearly stated a random thought about her that had neither beginning or end to its point. Therefore he may be talking about her and we don't know it. But, he is happy. He looks forward to the days his great grandson comes to visit. That is a point on which he can talk with some clarity for some time after the visit. As to his newest great granddaughter he is virtually indifferent. I have never really heard him mention her at all unless she is right in the room. He does remember that my brother has grandchildren. If he wins something at bingo at the adult day care he will bring home toys for the grandchildren, but not the new granddaughter.
While losing more control of his mind he is also losing more control of his body. That is something that seems to cause him embarrassment. That is good in a way. It shows he still has certain areas of awareness. It is bad, too. He cannot help it and he knows it. But, he is happy. That has to be my mantra because it is the sole thing to hold on to in these days of swifter decline. How fast everything will accelerate is still a fool's best guess. He could reach a plateau as he has in the past and stay there for months or more. He could slip and fall and be bedridden for a week and forget how to walk and be in a nursing home and into end stage Alzheimer's in a week. He doesn't know any of this, and he is happy. He is his own sunshine in his descent.
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